Don’t Make Me Laugh: How to Improve Bladder Control

Faulty plumbing.

There are a lot of reasons why we seem to get more leaky as we get older. But, as with breast cancer, the main risk factor for developing some form of urinary incontinence is being female. We get used to it early, in a way. Once we start menstruating, we leak blood every month. When we are sexually aroused, we leak vaginal fluids. Then things happen that disturb our urinary control. We have babies. We have urinary tract infections. We have surgery that may require the insertion of a catheter during and after our time in the operating room. But men develop urinary and bladder problems, too, sometimes because of an enlarged prostate or prostate cancer and its treatment, as well as because of infections, medications, or catheter placement during hospitalizations. And, common to both sexes, as we get older, stuff wears out. Our nerve signals may not work as well as they used to, so we may not know as quickly as we should when our bladder is full. Our strength and endurance may decline, making it harder to get to the bathroom in time. After giving birth, or going through menopause, breast cancer treatment, hysterectomies and oophorectomies, or other experiences that can change our hormones, our muscles and mucosa may get thinner and weaker. Our thirst signals may not work as well, so we may not drink enough fluids, leading to concentrated urine that can irritate the bladder. We may get constipated more easily, which affects bladder function. There are lots of reasons why we may leak, and I won’t try to cover them all. But I will say this: we can very often improve things fairly easily.

It’s always good to check in with your doctor — primary care, gynecologist, urologist — to rule out medical issues. But you may also want to see a physical therapist. Lots of us physical therapists are trained in treating urinary incontinence. And some PT’s are specialists in pelvic rehab. Particularly if you have pelvic pain, problems during and after pregnancy, painful sexual intercourse, a neurological disorder, or a prolapsed bladder, you may want to find a specialist physical therapist for pelvic disorders. You can start by doing an internet search for “pelvic physical therapy,” and adding your geographic location. One of my friends locally is a specialist and runs a clinic devoted to pelvic disorders. In my work in home care, I assess every patient I visit for urinary issues, like dribbling, urgency, bothersome frequency, and nighttime urination. Often, these problems are temporary, and develop after other medical issues that decondition my patients or require them to take new medications. So, their urinary issues may resolve on their own once we address those other problems. But a little instruction specific to urinary incontinence is usually helpful.

How to Strengthen Your Pelvic Floor — It’s Easy.

I’m not going to bore you with a lot of physiology. I usually teach people how to do a few simple exercises in a seated position. The main one is learning how to find and strengthen the pelvic floor. Basically, the pelvic floor is what you’re sitting on when you sit, and it acts like a sling to keep our innards in. For all of us, the anal sphincter is in the middle of it, and for women, our vaginal wall is near the front of it. If you sit up straight and comfortably, feet on the floor, and close up your anal sphincter like you are trying not to pass wind, you’re using your pelvic floor muscles. If you’re tightening your belly or your buttocks, you’re working the wrong muscles. It’s basically a gentle exercise that looks like you’re not doing anything. But when you do it right, you’ll feel a section of your pelvic floor pull gently up and slightly forward. If you do that ten times quickly, and then five times slowly and deliberately, you’ve got yourself an exercise program to help reduce urinary incontinence. I had a female patient recently who, when she had to urinate, would start gushing urine as soon as she stood up. A few minutes after the first time I had her practice doing what I just described above, she felt the need to urinate, stood up, and for the first time in months, was able to get to the bathroom without leaking first. Admittedly, that was a pretty dramatic result, but if you hang in there and do this every day, you should notice some improvement in a week or two.

There is this wonderful pelvic physical therapist in Australia, Michelle Kenway, who has an entire website full of resources, including videos, that covers every aspect of pelvic disorders. She has a video which describes in more detail how to do the above exercise to strengthen your pelvic floor, which you can view here:

In case you have trouble playing the video from this page, here is the link to it on YouTube: How to Control Bladder Leaks and Get ‘The Knack’

A Caveat: Why I hate the word, “Kegels,” and never refer to pelvic floor exercises by that name.

Years ago, when I first got some continuing education in urinary incontinence, I confirmed a theory I already had, which was that Dr. Kegel, who apparently invented them, had an incomplete understanding of anatomy. Or that everyone teaching women how to do Kegels did. The way Kegels often used to be taught was that you were instructed to strengthen your pelvic floor muscles by stopping your urine stream. Period. And guess what? It didn’t work, and women still had urinary problems. Here’s the thing I learned in continuing ed. When you stop your urine stream, you may be using your pelvic floor muscles, but you are also interfering with the bladder’s own signals, which tell the bladder muscle to keep urine inside while you’re walking around, and then to release it when you urinate. So, when you start to urinate, and then stop your urine stream deliberately, you are confusing your own bladder. And thus, rather than improving things, you can make everything worse. So, please don’t EVER sit on a toilet, start peeing, and then try to stop yourself. EVER. Unless you are being assessed by a physical therapist who instructs you to do it, ONCE maybe, as a test, or to help you find your pelvic floor muscles in the first place. And even then, there is usually no need to literally stop your urine stream, because there are other ways of locating the pelvic floor. Unfortunately, pelvic floor strengthening exercises are still referred to by some folks as Kegels, and a lot of women still get the wrong instructions.

How to help the bladder indirectly.

In the months leading up to when I first took that continuing ed course, I was working in outpatient rehab, and I had a lot of patients with back pain. And, among other things, I would try to help them loosen up and strengthen their hip rotator muscles, which are deep inside the buttocks and near our sacroiliac joints, as part of an exercise program to help them improve the function of their core muscles. And what often happened was that, after a week or two, they would mention in passing that they noticed they weren’t leaking urine or having to wear pads to bed anymore. At the urinary incontinence course, I discovered why. It turns out that the bladder muscle, called the detrusor, relaxes to hold urine in, and contracts to push it out. And the nerve fibers that signal it are apparently shared by the muscles that rotate our hips. So, it is thought that by doing exercises for our hip rotator muscles, we can indirectly help the detrusor. In my experience, it certainly seems to help the situation, so here is the simplest hip rotator exercise. You can click on the picture and save it, too:

Finally, some general advice. Please try to get enough fluids every day. I can’t tell you how many of my patients end up in the hospital for dehydration. And urinary tract infections. Our thirst signal gets more unreliable as we get older, so don’t wait until you’re gasping of thirst to drink something. But try to avoid carbonated sodas. You don’t have to slug back eight glasses of plain water a day though. Other drinks count. And eating fruits count. And green veggies count. And soup counts. Just get enough. You’ll help prevent constipation, which can also lead to bladder problems. Check with your pharmacist about medication side effects, too.

If you want a summary of all this to save to your computer, here are two helpful brochures:
Bladder & Bowel Community Pelvic Floor Exercises for Women
Bladder & Bowel Community Pelvic Floor Exercises for Men
A whole page of downloadable pamphlets on related issues can be found at this link: Bladder & Bowel Community Downloads

Good luck!

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The Gap Between Real World Healthcare & Social Media

nullWhen More Is Less, and Less Is More

Part of what I like to think makes my blog unique is that I’ve been a cancer patient as well as a clinician treating cancer patients. So, I have one foot in each camp, as it were.

This blog, and my introduction to social media, germinated almost ten years ago after I had been diagnosed with breast cancer in July of 2008. Desperate for help and information, I found my way, as many have and many will, to BreastCancer.org and it’s online, peer support community. Dozens, possibly hundreds, of the people I connected with in that community are still my friends online all these years later on other social media. Then and now, these friends help validate my experience and often provide helpful information about breast cancer and treatment and side effects and middle-of-the-night freaking out. Back then, communicating with them spurred me to start reading research studies again, which I hadn’t done much of since physical therapy graduate school. Because of that, I began to connect with clinical and medical and science websites, and with researchers who’d published interesting studies or were seeking study participants. One of the most helpful experiences I had early on was finding an online listing for two doctors within driving distance who were conducting a clinical trial on treating cancer related fatigue. Thus, I am one of the first people to extol the virtues of social media and of those of us who employ it to advocate for better healthcare.

But…

And it’s an important ‘but.’ I may write about healthcare here in cyberspace, but in my daily, real-world job, I work in the concrete world. I do connect with a secure server to upload my patient notes and download my schedule each day on my work laptop. And I email my colleagues and share a few pdf’s.

But my real work has little to do with zeroes and ones. I see patients of all ages, with all kinds of healthcare problems, in their homes, and try to teach them to walk better or not fall or to get out of bed without pain. And I have to tell you that, for most of them, social media has little to no impact on their experience of their own health and healthcare. A few of them might have a Fitbit. A few might have a patient portal account that they use to email their doctors’ offices or confirm upcoming appointments. And that’s about it.

The last thing that most, perhaps nearly all, of my patients would consider doing when they have a health crisis is to get online. You’d be forgiven for thinking this is an age thing, that it’s because most of my patients are elderly. And you’d be wrong. Sometimes, it does occur to a few of them, or to one of their family members or caregivers, to buy things like tub seats and walkers online. Most of the time, however, I have to tell them they can buy that stuff online. I have to tell the folks who have uncommon chronic diseases, or even common ones, that there are online communities that can help them feel less isolated. I have to tell them that there are websites for our state’s department of health, the department of elderly affairs, the local hospital or orthopedic practice, for Cancer.org, for the American Diabetes Association, etcetera, ad infinitum.

Pay No Attention to That Charlatan Behind the Curtain

Why don’t people get online for help with their health issues? Because they have health issues. Which means that they feel like shit, they’re exhausted, confused, overwhelmed, in pain, and generally gobsmacked. And the last thing they feel like doing is anything that does not immediately and concretely help them to feel better. And you know what? Mostly, I’m glad they don’t get online. I want them to listen to me and their doctors and nurses, and to follow our advice, not to read most of the execrable bullshit that passes on the web for healthcare information. I do not want them getting their health advice from the likes of Gwyneth Paltrow or Dr. Google. It’s bad enough that they watch TV. I wish I had a dollar for every time I’ve had to refute some nonsense a patient heard via Doctor Oz.

It’s hard enough for me to sort through the dross on the web to find the genuine nuggets. And I have an advanced degree in science. And I still get hoodwinked sometimes. But I also have online friends who are scientists, doctors, and intelligent healthcare journalists, and we help each other wade through the swamp.

That is not, however, true for most people. I have some very admirable friends online who have devoted themselves to improving health literacy, who work hard to improve their own, so that they can provide the patient’s perspective to researchers who design studies. But the odds that most of the thousands of people I have ever treated in the past twenty-five years could or would find their way to these web advocates or others like them is a snowball’s chance in hell. For real.

A Breed Apart

The thing to keep in mind is that those of us who are members of the healthcare social media community are not most people. Yet we may think we’re more important than we really are to most people. If there’s one thing that social media is good at, it’s declaring how important and influential social media is. And that’s true, up to a point. But we need a little humility, a little perspective about our role. When you have crushing, unrelenting chest pain, the sensible response is not to Tweet about it. You call a freaking ambulance.

I remember the first time I took a survey — one of several over the years — about how useful social media had been to me as a cancer patient. It was put together by a grad student who was working on her Ph.D. and whose mom had had breast cancer. It was pretty good. But when I got to the questions about who did the most to help me outlast cancer, or who I could most count on in a crisis, none of the answers included social media. The answers included the doctors and other clinicians who treated me, and the friends who drove me to see them. And yet, to hear some tell it, social media is going to save us all and reinvent the healthcare system. Really? Tell that to all my patients and work colleagues. Social media has facilitated awareness, research, and patient support. And it will continue to spur new and worthwhile ideas and projects. But the rest of the fix is not that simple.

In the Trenches

If you want to hear a passionate discussion about how to fix the healthcare system, talk to another clinician. And I don’t mean online. I mean in person, in a clinical setting or at a seminar. Or at the local pub over a beer or three. You’ve never heard intelligent snark like you’ll hear from us. A few of the doctors I’ve known over the years, who have also treated me as a patient, are especially enlightening. When I see them for a checkup, we often spend the first few minutes having a nice, soul-cleansing rant about it all. Do they check out social media for ways to further the cause? Hell, no. They have neither the time nor the energy. Frequently, neither do I. We’re all too busy trying to help our patients get better, or returning their phone calls, or typing notes about them on a computer, or wrangling with insurance companies and their criteria for reimbursement, or going to meetings and continuing ed seminars so we can remain competent enough to keep our licenses. On a daily, practical basis, has social media or digital documentation made our work easier or better? Not really.

I don’t have any immediate answers to this conundrum. And the ideas I have would require another blog post. But I can tell you one thing. When my patients improve, it has everything to do with how much access they feel they have to a real-world clinician who knows them, and how empowered they feel to take responsibility for their health. And then to do what they truly need to do in order to get better. And that’s where fostering the nexus between social media and the real world may be genuinely useful. Any and all ideas welcome. In the meantime, onward, friends.

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The Light is Everything

“Still, what I want in my life
is to be willing
to be dazzled—
to cast aside the weight of facts

and maybe even
to float a little
above this difficult world.
I want to believe I am looking

into the white fire of a great mystery.
I want to believe that the imperfections are nothing—
that the light is everything—that it is more than the sum
of each flawed blossom rising and falling. And I do.”

― Mary Oliver, House of Light

Last year was a hard year. At this time a year ago, there were a couple of bombs about to go off in my personal life. One was that my elderly and much beloved cat, Fiona, was dying of cancer, but I didn’t know it yet. The other was that I was rapidly developing symptoms that, being a physical therapist, I would consider and reconsider, and finally realize I had to do something about or face disability. I variously wondered if I were developing a neuromuscular disorder, like multiple sclerosis, or if the neuropathy in both hands, the eroding balance, and the overall muscle weakness were the result of something more mechanical, but equally alarming, like a pinched nerve from a herniated disk or arthritis in my spine.

By the end of January, after three weeks of frustrating, apathetic vet care that caused Fiona — and me — a lot of needless suffering, I took her to a compassionate vet hospital where my sweet girl died of bowel cancer at the age of fifteen. And for the first time in thirty-five years, I had no pets in the house. A few weeks later, I adopted two feral female cats that had been separately rescued and brought to a local shelter, where they had languished for several months, waiting for some crazy human to take a chance on them. Not long after that, I had an MRI which showed that my spinal cord was being compressed by three bulging disks in my neck, and I needed surgery urgently. I went on leave from work in mid-April, had surgery, and did not return to work until late June. I had side effects from the mechanics of surgery for months — still do, in fact — but I could walk again without a cane, hold a pen and use a keyboard, feel my patients’ pulses with my fingertips, and do my job.

Meanwhile, in the online breast cancer community, we were losing people. Nothing new there, sad to say, but we were losing ass-kicking, brilliant, well-known and much-loved advocates and activists. People like Lori Marx-Rubiner, a long-time advocate and blogger whom I’d finally met in November of 2016 at a conference on MBC. Like Beth Caldwell, an attorney, activist and co-founder of MetUp. One of those we lost was my friend Susan Hamson, aka Scorchy Barrington, known to many from her blog, The Sarcastic Boob. Susan had been dying by inches of metastatic breast cancer herself for much of the time I’d known her, but especially in 2017, she was teetering on the edge, alternately in a hospice facility and in an acute care hospital. Not long after I was finally returning to work, Susan was beginning to lose the ability to communicate. Less than five months later, on November 14, 2017, she died.

I still cannot type about, or talk about, or think about her death at any length without feeling completely gutted. Many of you know what it is like to form a heartfelt, mutual bond with a sister in our cyber community that extends into all forms of communication. Many of you also know what it’s like to finally meet one of these precious friends in person. In October of 2016, I not only got to meet her, but I got to have her as a guest for a three-day weekend at my home, being snuggled by dear Fiona, who knew a cat lover when she met one, and who kept finagling ways to get the three of us in close proximity all weekend. I had tried to talk Susan into letting me take the train to visit her instead that weekend, but I think she knew it was the last time she would be physically able to attempt such a thing. And I’m a clinician, and I live down the street from the hospital system that employs me, and I knew if something dire happened, I could look after her. So, she came, by Amtrak, from NYC, to the charming, late-Victorian train station ten minutes from my home in southern New England. It was lovely, and I will always cherish the memory of that visit. But it makes my grief all the worse. She deserves, and will get, a post from me that is devoted solely to her, but not just now, not just yet.

Then there is the world, this country, and its politics. There is the sobering awareness of the scale of sexism and misogyny we’ve all experienced, an awareness brought about by the #MeToo movement. There are still and ever mass shootings. There have been ungodly natural disasters that have destroyed swaths of America by hurricanes, fires, blizzards, you name it. The drinking water crisis in Flint, Michigan is still unresolved. All of these things have affected the lives of countless individuals, changing them forever. One of my friends and colleagues was hit last year by a drunk driver while she herself was driving to visit a patient. She lived, but she has been unable to work since. And for me, there is the reality of working in home health care, and visiting people who are disabled or sick or old or poor, or all of the above. And of being astounded at how utterly ignorant, how lacking in any sort of compassion, that dozens of our national elected and appointed so-called public servants apparently are toward the reality of the people I treat every day. I’ve had to learn to ignore a lot, or limit my exposure to a lot, else I could not get out of bed in the morning.

One thing I’ve discovered though is that, miraculously, nine years after I was diagnosed, the personal aftermath of my own breast cancer and its treatment doesn’t bother me much these days. Sure, any year now, I could have a recurrence. But I don’t seem to live in the “could” of it anymore. The possible seems to have been shaken right out of me by the actual. A year ago, I was on the road to being permanently disabled by something that wasn’t cancer. Nothing like perspective. After the past year in particular, you can scarcely escape the awareness that there is a whole lot of other shit out there that can destroy life as you know it.

So, at the beginning of this new year, while I dig out of the large pile of snow Mother Nature just dumped on us here in New England, I want to thank my real-world and virtual-world friends, and my blog readers, for being there, and for helping to leaven the heart-breaking parts of the actual with the sheer vitality of your daily existence. I thank you all for being kind, and funny, and whip smart, and perceptive. I thank you for giving a shit about the world and about me, for laughing at my attempts at humor, and for cheering me on as I try to convince two feral cats that humans are indeed worth loving. I am so grateful to you and to the fur girls for helping me to discover that I can still be dazzled, and that I am still willing to be.


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Double, Double, Toil & Trouble: It’s Okay to Ignore Pinktober

[Originally published as a Note on my Facebook page on Saturday, September 30, 2017 while my blog server was down.]

PTSD: Pink-Tober Stress Disorder

There’s more than one type of PTSD. There’s the post-traumatic stress disorder that many of us develop, to one degree or another, after having cancer and cancer treatment. It’s the kind that occurs when our existence is threatened and our entire notion of normalcy is ripped apart and tossed upside down. We are never the same again.

Then there’s the PTSD that comes of having a cancer recurrence. Or the PTSD of being diagnosed with metastases. Or of having someone you love diagnosed with a recurrence or metastases. Or of having someone you love die of metastatic cancer. Or of having several someones you love die of cancer. Or of refraining from trying to list how many people you have lost from metastatic breast cancer in particular, because you’re afraid you’d probably forget some of them because there have been so goddamn many.

And then there’s this year in these United States. A lot of us here have been suffering from socio-political PTSD. Last year’s presidential election campaign was a bruiser. And the outcome, along with what that has revealed about our legislators and our citizenry, is none too savory either. If you are reading this, you probably have a pre-existing condition, which means you’ve been enduring the cliff-hanger created by the GOP, while they have endeavored to make it harder and more expensive for you to have health insurance at all. Double ditto if you’re disabled, poor, or female. Or just not white, male, and wealthy. Apparently that’s all it takes to be disregarded by much of the gang in Washington.

I used to be a bit of a news junkie. I don’t have a TV, but I’d listen to public radio news every morning and evening at home, as well as in the car as I drove around visiting my homecare patients. Not any more. I stopped listening around the first of the year. Now, I read a very whittled-down selection of online news, and not from sources that have demonstrated their inability to stick to facts, no matter what end of the political spectrum they represent.

Which leads to another source of stress this year: social media. Social media is brutal these days. A lot of us have had to do some serious housecleaning. Blocking and unfriending have probably reached some kind of all-time high. Unfiltered posting is more rampant. Forgiveness is more problematic. Acceptance of differing views is more complicated. Me, I’ve become adept at selective scrolling on Facebook. I’ve become allergic to hype, and even more suspicious of so-called “news,” too much of which amounts to pandering. I stay away from Twitter altogether. Mind you, I admire the people there who track public figures and politicians, and endeavor to keep them honest. But Twitter feels like an endless cage fight to me, and I just don’t have the stamina for constant one-ups-man-ship. Which is saying something for a blogger who has herself employed ample snark.

Then there’s my personal life. In January, my beloved fifteen-year-old kitty developed cancer and died, after a month of misery. At least I got to stroke her head and kiss her face before the vet started the IV that ended her suffering. [How to Be Loved by a Cat] But I was shattered. After 35 years, I had no more fur babies in my home, a chasm I eventually filled with two rescued feral cats from a local shelter. Meanwhile, I developed some alarming symptoms — neuropathy, pain, muscles spasms, weakness, loss of balance — that were caused by spinal cord compression in my neck, and I had to have surgery to fix it. Not fun. At all. Still recovering. But, heck, at least I still had job-based health insurance, which the nimrods in Congress could not repeal away. And my leave of absence from work was covered by paid sick time. And I was able to return to work eventually. And it wasn’t cancer. But let’s just say it’s been a rough year.

I’ve been blogging for nine years now. I’ve published over fifty posts, and created countless memes, that have to do with the pointless, puerile merchandising and fundraising extravaganza that we skeptics call Pinktober. There’s even a tab on my blog, called “Pink Peril,” that lists them all. [Fighting the Pink Peril] If you don’t know by now that pink is not a cure; that breast cancer is not a game; that there is only one day set aside in so-called “Breast Cancer Awareness Month” to acknowledge metastatic breast cancer; that only 7% of breast cancer research funding goes specifically to metastatic breast cancer; that Fancy Pinker (thank you, Katie) has yet to keep her promise to find a cure, the promise she made to her sister Susan G. Komen before Susan died of metastatic breast cancer, yet she continues to draw a six-figure salary as Komen chair while not fulfilling that promise; if you haven’t figured out by now that it’s not about our breasts, but about our lives, then WAKE THE HELL UP! And read this, right now: 13 Facts about Metastatic Breast Cancer

As for the rest of us, I hereby grant us all permission to do what we need to do to maintain our sanity. And if that includes ignoring Pinktober, then so be it. We have enough shit to deal with. After nine years, and the loss of too many friends to this cruel disease, while several more suffer endless treatment with the sword of Damocles hanging over them, I’m as aware as I’m ever going to be. And more than likely, so are you.

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